As I put the car in park, I placed the handicap placard on my rearview mirror. I glanced behind me. My younger children were happily munching on snacks oblivious to the mental gymnastics I was doing as I thought about how to get us from point A to point B. I need to give them directions, so I asked them to take a break and listen.
“Guys, after we get out, we’re going to walk together. I’m not sure how the event is set up, so be ready to listen to directions and follow them, okay? It’ll take a few minutes for me to get Ronan ready, so finish your snacks and then let’s get ready to go.”
Nodding that they’d heard me, I turned my attention to Ronan. Opening his car door, I said, “Hey, buddy. I’m going to get your adaptive stroller from the back.” We haven’t needed to use it for quite some time, but with the long walk and the long wait I was anticipating, I let Ronan know that he’d be using it.
The kids gathered around while I buckled Ronan in his stroller. Ronan’s younger brother said, “Mom, when people look at Ronan, what do you think they think?”
We hadn’t drawn any unwanted attention (yet), but several other people were very close by, which is probably why Willem asked me that question. Some people were heading to their cars to leave while others were getting themselves organized to walk over to the sports’ field like we were. Not wanting to make any sort of eye contact with anyone, I had kept my head low and concentrated on making sure that Ronan was comfortable. I looked at my son and swept my gaze across the busy parking lot. Instead of taking a minute to answer him, I asked, “Well, before I answer that, what do you think that other people think when they see Ronan?”
Quickly responding, Willem said, “He’s in the stroller because his legs aren’t working or because something is wrong with him…or, or it’s because he has special needs. I know that without Ronan, I wouldn’t know what special needs meant, but because of Ronan, I know that it can mean someone has disabilities.”
“That’s a great answer!”
I continued, “If I didn’t know Ronan and I saw him for the first time in the stroller, I’d think that maybe he’s got problems with his legs. I don’t know if I’d think he had other problems unless I got to know him better. Ronan looks like a regular kid most of the time. It isn’t until someone tries to talk to him do they realize how delayed he is. That’s what I’d think.”
Ronan’s younger sister, Izzy joined the conversation, “I think they might think that Ronan should be able to walk and talk and play with other kids, but the more they look at him they see that Ronan can’t do that stuff. I think those people might think he needs extra help. But some people don’t come over to help. They just stare.”
We were just about to take the long walk over to the sports’ field when I asked Izzy, “Is it okay for people to stare?”
“No!” Ronan’s little sister emphatically answered.
I asked, “But what if it’s okay to stare?”
“Well, it could be rude,” she started, “Unless…unless I say something to that person who is staring. If I say something like, ‘Hi, do you have any questions about something…like about my brother…you can ask instead of stare because I can help you if you have a question.’”
I smiled and said, “Exactly.”
I asked her to continue. She did. “If they ask me something, I could start a conversation. What does that lead to? Me telling them why he’s hurt, why he’s there in the stroller not walking, why he has struggles. Then, I can help to educate them on things besides Ronan. I could talk to them about stuff like autism, and seizures…and vaccines...”
I was floored. Izzy’s only 9 years old. Assuring her that she was on the right track and that she could be the one who turns an awkward moment of someone staring at Ronan or at us to a positive moment, we began the long walk to the field. Izzy and her little sister talked about how some kids can talk and walk and other can’t. They wanted to help them even if they didn’t know these other kids because that’s the nice thing to do. I laughed to myself. The girls are not always the kindest to each other, thanks to sibling rivalry, but they were both ready to go out on a limb to help a complete stranger! With a gentle reminder to always remember to be kind to everyone the encounter, including each other, we continued our walk.
The sports’ event was well attended and long, but Ronan did great. The kids were proud of their big sister, Fiona, for doing well in her competition and were very happy that we got to stay to see her compete. Staying for an entire event, performance, or get together doesn’t always happen. Ronan’s behavior or attention span can prevent that. On our walk back to the parking lot, we let Ronan know that we were all glad that he was able to stay for the whole thing. He’d be tested again toward the end of the week, so as many times as we can practice going, attending, and leaving an event without an early exit or a meltdown keeps us all hopeful.
While getting everyone ready for Izzy’s baseball practice early Friday evening, the kids were surprised to hear that Ronan was going to go with us, too. I looked at them quizzically, “Why would he not go?” Izzy said, “Mom, it’s almost 6:00. It’s going to be a lot of waiting. He shouldn’t have to do that. He’s going to be hungry and want to stay home.” I let Izzy know that I hadn’t made other plans for Ronan to stay home, so we’d all have to go together. Still thinking it a bad idea, Izzy looked at me with doubt. I assured her, “He’ll be fine, so let’s load up and get going.”
On the way to the ball field, the kids started talking among themselves. I had the radio on and got lost in my own thoughts, but Willem got my attention.
“Mom? Mom, if you had one chance, would you take away Ronan’s disabilities?”
“What?” I asked.
He repeated, “If you could, would you take away Ronan’s disabilities?”
“I would. I absolutely would. If it meant he could have a more fulfilling life where he can be independent and experience some of the same things you kids get to, yes. Yes, I would.”
Izzy threw me a curve ball. “Mom, would you die for it? Would you give your life for Ronan?”
“That’s a tough ques—,” I started before Izzy cut me off, “I would. I would give my life for Ronan. I’d do it for him and for anyone.”
Speechless, I looked in the rearview mirror and smiled at Ronan’s younger sister. A minute or two later, I said, “Izzy, I would give my life. If it meant that Ronan did not have to have mito problems, if it meant he could talk again and play again and not have neuropathy and seizures or any the other stuff that scares you guys, I would give my life for him.”
“I would, too,” Willem added.
“Well, you kids are pretty awesome. While I hesitated, you knew instantly that you would be ready to give your life for your brother. You do that to some degree already. You give so much to Ronan without realizing it. Besides the physically things he needs, like putting on his favorite movie and getting his snack ready when he signs that he’s hungry, you give him more. You wait patiently for him when you know it takes Ronan longer to get ready. You tiptoe on days you know he needs us to be quiet because his head hurts. You come up with other fun things to do when you know he can’t handle an activity. You may get frustrated with each other, but you are always kind and helpful toward Ronan. Sometimes I get sad that things are so tough, but I’m really very proud of you for being such great kids and an even greater sibling to Ronan.”
Ronan’s youngest sister piped up. “We’re proud of you too, Mommy…”
Smiling, I said. “Well,…it’s tough sometimes, but…I…”
She wasn’t done, “..for being a good Mommy. You’re a good Mommy to all of us.”
My heart swelled with happiness. “Well, thanks, honey. I can’t wait to see what you guys get to do when you grow up. If you’re this passionate about your brother and what he goes through now, wow. You’re doing some amazing things already, and I can’t wait to see what you get to do when you’re older.”
That sparked a conversation about what the kids wanted to be when they grow up. Through the observations and the interactions they’ve already experienced, and because of the autism, the seizures, the mito and the vaccines, the kids have thought of ways to make the world a better place. They want to do more not just for Ronan but for other children as well. Izzy wants to work with our Occupational Therapist because she wants to help other kids like Ronan. Lately, Willem has toyed with the idea of being a teacher but he also wants to invent things to help Ronan to be able to walk better (like robot pants) and to talk better. I silently listened and continued to smile as we made our way to baseball practice.
Inventing, teaching, providing therapy, or whichever career path they end up taking, these kids will walk into their field with real-world special needs experience. While still getting to take part in their own childhood activities, like baseball and drama club and other things they eagerly sign up for, no matter what they get to do, they do it selflessly, happily, and with more positive thoughts than I’ve allowed myself to have. Those positive thoughts and my children’s selfless actions toward their brother remind me daily to remember be grateful. Instead of thinking about what we don’t have and what we can’t do, they show me that I should concentrate on what we can do and on what we do have. They do that well thanks in part to the life they get to live with Ronan.
Cathy Jameson is a Contributing Editor for Age of Autism.